Wednesday, October 29, 2008

Sorry so long for an update. His sleeping schedule continues to be insane. Apparently he inherited the night owl gene from both his mommy and daddy.

We saw our pediatrician last week and had another great check up.

He weight in at 6lb 9oz. She charted his growth on his chart and said he's on track to catch up around the year mark. That's great news for baby who was three months early.

There's a rule of thumb that for every month they're early, it can ake a year to catch up. And most of the therapists use 2 years as the magic mark. So to be caught up by a year actually puts him ahead of the game.

She was also ready to take him off his apnea monitor. That made me very nervous, though. So she said we could keep it for another 4 weeks.

The monitor is annoying to carry around. And we're forever tripping over the cord and unplugging it sounding a VERY loud alarm. But the reassurance is really nice. It's going to be a huge adjustment to just trust that he's actually breathing okay.

As for home life, things are good (except the sleeping thing.) He's smiling a TON and really starting to laugh a little. It's still more of a "heh" noise than a giggle, but he throws his head back with such amusement that there is no doubt that it's a beginning laugh.

And as bad as the lack of sleep is, just when you're ready to have a nervous breakdown from lack of sleep, he smiles and you're suddenly invigorated again. I fall more in love with him every day.

He's also starting to really find his hands. He's always been very good at getting his hands to his mouth (a great developmental sign) but it was more of a happy accident if he managed to get them IN his mouth. These days he's getting more and more purposeful about getting them there. Sucking on his hand and his fingers/thumb/fist is so adorable and makes him so happy. I'm sure in a few years, I'll be struggling to get him to stop, but for now, it's great to see.

And with that- two weeks worth of pictures!

Napping in mommy's bed with Pierre and my sister Contessa:

Pierre chases the nightmares away:

Mommy loves my chubby cheeks:

And chubby fingers:

A half smile in my sleep:

Tummy time makes my neck muscles strong. This is me turning my head to the other side:

YAY tummy time!

Daddy plays, too!

Sometimes, I'm not so happy:

But I get over it quickly:

Last weekend my great-grandma came to visit. She likes my brother Kenzie:

But she loves me more:

Hmm. What kind of mischief can I find here?

Just hangin' out with my momma.

I'm a happy baby!

Smilin' in my sleeps!

Hey everyone.

All the busy patterns made me tired!

The cure for what ails ya.

Nom Nom Nom. Tasty fist!

On my boppy in mommy and daddy's bed.

Don't you wish you could sleep like this?

I see you!

I love my daddy.

I got to see my NICU BFF at the doctor on Monday.

And then we had my first playdate on Thursday!

And a video. Pardon my foot in the background there. I was sitting indian style on the bed with Robbie propped on my leg. But his smiles and cooing more than make up for my ugly foot, I promise.

Saturday, October 18, 2008

For several days leading up to it, he'd been smiling at some favorite things- his pacifier, a bottle etc. But nothing that I could really call a social smile.

A couple of days ago, David and I were talking and he smiled in a way that I THOUGHT he was smiling at us, but I couldn't be sure.

But yesterday morning, he woke up in a good mood. I tried to feed him but he was too playful to pay attention to eating, so I set the bottle aside and mimicked his sounds.

He said "Wawhh Wawhh" so I said it back. And he smiled! I thought maybe it was a fluke. So I did it again. And he smiled again!

After 4 or 5 in a row, there was no question he was smiling at me.

Since then, they've come easier and easier. I spent most of the evening and today trying to catch one on camera, but you really have to make eye contact with him to get it, and that's hard to do while also aiming a camera.

Sunday, October 12, 2008

This week Robbie had his big meeting with Early Intervention (EI.) It's a program through the state that evaluates (and treats, if necessary) children for developmental delays.

Robbie automatically qualified for evaluation based on his gestational age at birth and birth weight.

Over the last few weeks, we've had several therapists out to the house to look Robbie over. First, the coordinator came out to get a feel for what he might need to be checked on. She decided we needed a developmental therapist and an occupational therapist.

Then on Thursday, all of them (and a bonus coordinator-in-training) came to discuss their findings and discuss therapy.

but commented that the scale they use isn't really set up to show everything that she'd like noted.

Her comments:

Robert is an adorable 17 day adjusted male that has a loving and supportive home. He demonstrates developmental strengths that include alertness, emerging flexion, good appetite, and natural reflexes for prematurity. Robert will benefit from increased suction while eating, controlled swallowing, monitoring nipple flow, continued breast feeding skills and continued strengthening.

While they were here, he was awake and getting ready to eat, so they all got to see him in a perky mood. There were lots of oohs and ahhs and how alert he was. He was clearly curious about all the activity. (There were 4 of them.)

Essentially, they left the decision for therapy up to me. If he were a full term infant who was 1 month old, he wouldn't qualify for therapy. He's not behind. (Therapy normally requires a 30% delay) but because he was so early, we can do it anyway.

There is a fee for the services, but it's based on income and could be reimbursed by our insurance. (Something I still need to check into.)

I opted to go with therapy. The only thing he really needs to work on currently is nursing. He eats from a bottle just fine, but still will only nurse sporadically and for short amounts of time.

The occupational therapist who was here is also a lactation consultant and explained that he isn't use the correct motion to nurse. He can do it, but prefers the "easy" way at the bottle. She gave me a simple exercise to work on it (basically he sucks on my finger and I put some downward pressure on his tongue) but with therapy, they'll help even more.

They set a 6 month plan that involves making sure he makes his developmental milestones.

It will be a few weeks until everything is completely set up, but soon we'll have once a week therapy in our home. They said that after a few weeks, the therapy will be less frequent, but for now, we'll get a good start.

I'm so glad to have the availability of the program. He's at very high risk for delays. Hopefully with a team of experts keeping a close eye on him, we can avoid them altogether, but at the very least if anything shows up, we can work on them right away.

In the meantime, things are going very well.

He's finally starting to smile a bit. I'm not sure he's smiled at ME just yet, but he has smiled at his pacifier, and occasionally when you put the bottle in his mouth. It's amazing to see his little eyes light up. He's smiled before, of course. But not the huge, beaming (if brief for now) smile is unbelievable.

Earlier tonight he smiled at his bottle and David and I both giggled like children just watching him. It's impossible not to smile back at a smiling baby.

It was a Gastrostomy. Essentially he had a tube that led directly into his stomach. It was put in during surgery as a "just in case" measure. Turned out, he never needed it.

It was frustrating for me because I was fairly certain he didn't need it, but all the doctors and nurses insisted it was good to have. He had only started being able to eat by mouth a couple of weeks before the surgery and hadn't had a chance to prove he was capable of taking everything on his own.

Of course, he woke up from the surgery and absolutely demanded to be fed by mouth. The tube hasn't been used since that week, but it had to heal enough as it was before it could be removed. That healing takes 6 weeks.

Which brought us to yesterday.

The actual process of taking it out took about 10 seconds. It was held in place with a balloon. The surgeon deflated the balloon and pulled and it was out.

They actually leave it open to heal on its own. It's terribly gruesome to see your son with a giant hole in his stomach.

Robbie need to have an empty stomach for the removal, so he was understandably hungry afterward. THe surgeon said I could feed him right away, so I did- in the back of the office.

After I pulled him away from my body from burping him we were both soaking wet. All of his feeding has completely leaked out of him. The gauze over the wound, his onesie, his sleeper and both of my shirts were completely soaked.

I immediately went to ask if that was normal and was told that it was.

They promised it would improve quickly. It should be completely closed within 2 weeks, but if it isn't in 6 weeks, he'll have to have surgery again.

I cringe at the thought.

Our pediatrician called for an unrelated matter in the afternoon and I told her about it. She suggested keeping him on his right side and leaning back as much as possible to keep it from leaking, so that's what we did.

She said she'd never seen one not close on its own before.

I had to tell her that I was less than reassured by that as she'd also never seen a hiatal hernia. She chimed in and said "Yeah, or a fundo that he still throws up." Yep. That's Robbie. We don't call him Remarkable for no reason!

I'm happy to report, though, that things have drastically improved. I've changed his dressing a few times and there is very minimal discharge- definitely not full feedings coming out any more.

It's still pretty gross to hear air leaking out of it. When he fusses or even just strains a little, you can hear it gurgle & hiss. But at least it's getting better. Hopefully it continues.

Thursday, October 2, 2008

Robbie is now up to 5lb 7 oz. He was on a good roll until this week. He only gained an ounce in 4 days. Ideally, we'd see closer to an ounce every day, with a minimum of a half ounce per day.

The slowed growth won him an added bottle of fortified milk per day. Basically we add powdered formula to a bottle of breast milk to increase it from 20 calories/ounce to 24 calories. We just hope it works!

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About Us

Robbie was born 14 weeks prematurely on 5/31/08. He weighed 1 pound 7 ounces an was 12 1/2 inches long.
He spent 96 days in the NICU, coming home on his expected due date September 4, 2008.
He's now three and amazing us every day!